Newly diagnosed ATM- please help

allisonp
allisonp Member Posts: 7
edited March 2020 in High Risk for Breast Cancer

Hi everyone-

I’m thankful to have found this site. Last week my GYN called me with my genetic testing results and told me I was positive for ATM. She couldn’t even pronounce the word. At first she said I was BRCA positive then said it was ATM. Then told me she’s never heard of it. Then she went on to say I was at high risk for pancreatic cancer. She kept saying how sorry she was. This was all a phone call and I hung up scared to death. I’ve never had any health issues or surgeries. I had the testing done because insurance paid for it and my older sister is a breast cancer survivor- had a double mastectomy at 39 for HER2+ we have no family history of breast cancer. It was found on her first routine mammogram. Her can we oncologist didn’t think BRCA testing was necessary and she never had it done. Therefore I didn’t when this test was offered to me. But this time I this if it’s covered why not?! So- here I am. All I can find is internet information. Nobody knows what I’m talking about. I have an appt with a genetic counselor MD at Dana Farber Cancer Institute in Boston Wednesday. I already feel I want a double mastectomy with reconstruction. My GYN mentioned an oophorectomy too. I have dense breasts as well. I’m 45. Active (I love to run) I have a daughter a son and a supportive husband. Will this be my choice or will they guide me with their opinion? Because this is so rare will they have the right information for me?! I’m so afraid. I feel like I want to get it before it gets me. I’m not sure I could have the MRI’s every 6 months. The constant worry would almost be too much to take I’m thankful for this safe place to come to for your thoughts and advice thank you. My insurance covers everything I’m grateful for that



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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2020

    Dear allisonp,

    Welcome to you. We are sorry for what brings you here but glad that you reached out for support. You might consider using the search function to find others with ATM in the community. Let us know how we can be of help. Keep us posted about your upcoming appointment.

    The Mods

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited March 2020

    I’m sorry and frankly angry that you were given these test results without additional support, information and back up.

    To address the question of whether the possible risk-reducing surgeries are optional: YES. No one can make you undertake treatment against your will.

    There’s no need to torture yourself over potential surgeries. Wait until your appt. with the genetic counselor and discuss those at that time. I suggest using the interval to write down every question that crosses your mind so that you’re well-prepared fir that appt. I also strongly advise using the voice memo app on your phone to record the appt. You are going to receive (hopefully) a wealth of information. Trust me, even with a family member taking notes you will NOT remember much of what you hear!


    Dana Farber will definitely have reliable, up to date info for you. ATM mutations are not known to be common but they have been studied for a good while and more is understood day by day and DF has an excellent reputation. And if you wish you can request a second opinion at any time now or in the future. You may have to pay out of pocket but possibly not.

    For good, solid, information check out Facing Our Risk Together. Much of its info is aimed at those with BRCA mutations but you will find good basic info on ATM. They also provide peer support: No matter where you are in the US or Canada you can be matched up with someone who has been where you are and will offer tons of support and info. They even pay the long-distance charges.

    Color.com also has reliable and very up to date info on many mutations, including ATM. Current guidelines for management of mutations is available, which I think you will find helpful.

    There’s no need to bring your kids into this at all until after your GC appt. and possibly not even then, depending on their ages and personalities. That’s another concern to add to your list of questions.

    I know your mind is reeling at this point. Take a few deep breaths, tell yourself it will be alright and focus on good times with your family. It’s improved step away from the worry wheel at times such as this :)

    Feel free to send me a private message if needed.

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  • mrr68
    mrr68 Member Posts: 1
    edited March 2020

    Although I don't have ATM I requested genetic testing. Insurance covers it and it may help confirm my choice that I will have a bilateral mastectomy with reconstruction. After a routine breast reduction in November they found LCIS & PLCIS in both breasts. From what I understand LCIS is an indicator of breast cancer but the abnormal cells themselves don't turn into cancer. The PLCIS cells can turn into cancer. Because of this I'm estimated at 20-40% high risk for breast cancer. I went to the surgeon and oncologist last week to go over treatment options and risks. Mastectomy will reduce my risk to 2%. We are an active family as well and I don't want to be worried about this for the next 5-10 years. I keep doing my own research and I'm hoping I'm making the right decision. If I test positive for the BRCA gene mutation it will give me more relief that I am making the right decision. I don't want to have MRI's either as I'm extremely claustrophobic. Valium didn't help. And worrying every 6 months isn't going to give me the quality of life that my family and I need. My daughter is 12 and I want to continue to be present for her and not worrying about cancer. I hope you find the answers that you are looking for to help you.

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